When you have a family member with a disability your schedule is built around finding good medical care to provide the therapy, tests, or medication s/he needs to be as healthy as possible. Medical care is expensive, even for simple routine office visits. However, people have options in how they obtain and find money to pay for care.
Employer-sponsored health care
If you work for a large corporation you may have access to a robust health insurance plan. Employers have two options when they offer health insurance. They can either self-sponsor their plan or they can buy it direct from the insurance carrier. The route your employer chooses could have impact on what services will be covered under your plan. An employer may choose to self-fund its plan because it saves on the cost of the premiums. This is a risk because if employees have more claims than what is anticipated, the employer may not save any money. They may recoup the loss by not giving out bonuses or increasing salaries.
The other route that employers can take is to buy insurance directly from a carrier. The drawback to the employer is that any profit at the end of the year is kept by the insurance carrier. Premium minus claims equals either a profit or a loss. Employers realize no incentive by buying insurance from the carrier.
People who develop a debilitating health issue or who were born with a disability benefited from the Affordable Health Care Act. When this act passed, it guaranteed to people that they could not be denied in the future by a health insurance company for any health issue that had occurred previously. So, what that means is if you choose to change jobs or move to another part of the country for the benefit of your family, and you switch health insurance plans, you are automatically accepted without being charged more or limiting the amount of claims you file.
Insurance is regulated on a state by state basis. Each state’s regulatory commission is charged with advocating for the consumer and is an insurance regulator. What this means for families, though, is if you choose to move to another state, you will want to make sure you can obtain what you need for your family’s medical care. Insurance coverage is not standardized in the United States. The advocacy work of families impacted by autism forced many states to pass legislation requiring insurance carriers cover autism related therapies.
“As of June 8, 2017, 46 states and the District of Columbia have laws that require insurance coverage of autism services including Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, District of Columbia, Florida, Georgia, Hawaii, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, West Virginia, and Wisconsin. Washington state is providing insurance coverage via a lawsuit and follow-up regulations. Georgia, Hawaii, Mississippi, North Carolina, and South Dakota had previously had no legislative coverage and added coverage via legislation in their 2015 sessions. Other states may require limited coverage for autism under mental health coverage or other laws. At least thirty states mandate some form of autism services in their exchange.”
The Easter Seals Society keeps a comprehensive state-by-state list of insurance coverage for disabilities specific to autism. According to the nonprofit 2016 executive summary, most states have passed autism specific legislation through citizen advocacy of elected official. However, three states (Florida, Louisiana and Washington) were forced to enact legislation through lawsuits filed by families.
If you work for a small employer or are self-employed, your insurance may not cover critical therapeutic services, such as Applied Behavioral Analysis, which is considered best standard of care for people with autism spectrum disorder. If you are in that situation, then you can purchase a supplemental plan for specific services. A niche product, supplemental plans are best vetted through an insurance broker, who is trained in this area and has done the footwork.
The National Conference of State Legislatures provides a clearinghouse of information of state law as it relates to the limits of services for ASD. On-going advocacy is needed to ensure all states pass legislation which makes health care available for working families who have children with disabilities. Some families are paying as much as $6,000 a month for ABA services if they don’t obtain insurance
Paying for prescriptions
Whether you are born with a disability or you develop a chronic health condition later in life, you will need access to medication to help manage some conditions. Even with insurance, prescription medications can be expensive. However, programs exist to help people pay for their medications.
Several non-profits exist to help people access grant programs to obtain their medications. One such program, Needy Meds can help you locate programs according to your diagnosis and provides advocacy training.
Needy Meds also administers a crowdfunding platform, HEALfundr, for medical needs. About 51 percent of patients owe $1,000 or more to their healthcare providers. Needy Meds also offers a medical bill mediation service. Respective state insurance commissions can provide resources on mediation, too. According to Healthcare Administrative Partners, about 80 percent of bills sent to patients contain errors which benefit the medical provider. Using a medical bill mediator can uncover errors, find funding assistance programs, and reduce the final bill for a patient.
For some families, the medical costs for their children is just too much, even with a robust employer-based health insurance plan. According to the Centers for Disease Control and Prevention it costs an additional $17,000 in health care for a child who has autism. If a child has severe autism, the costs rise to $21,000.
Another consideration for families is to plan for their child’s future as s/he becomes an adult. The most recent research shows adults with autism are more likely to be unemployed than people with other disabilities. Consequently, they do not have the ability to access employer-sponsored health insurance and are placed on Medicaid for access to health care.
Medicaid is jointly funded through federal and state dollars. Each state has different criteria to determine eligibility. All states have Medicaid waiver programs, meaning you will become eligible for a particular program if you ask for it just by virtue of having a family member with a disability. It’s VERY IMPORTANT you call your state’s Medicaid Waiver program because it has decades long waiting list to receive these services. When I called for my family, I spoke to an empathetic gentleman who could tell it was difficult for me to do this. He was kind and courteous with me.
I do not know if my son will require Medicaid services when he is older but I have Medicaid ready to reach out to me when he comes of age. Because the future is unknown, it is best to ask for things and not need them then to find yourself scrambling at the last minute and possibly risk your adult child’s chances of having the support s/he will need at that time.
If you or someone you know needs help in advocating for someone with special health concerns, please reach out to us today!
©2019 Brenda Henning